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Self-management programs are known to increase self-efficacy for disease management for patients with many common chronic diseases. Disease self-management programs typically include multiple modules that focus on self-efficacy enhancing strategies and provide the knowledge, skills and confidence essential to managing physical, emotional and social consequences of a disease. Users are taught problem-solving and management skills. In a rare disease like scleroderma, self-management is complex and important challenges faced by people with scleroderma are not part of generic chronic disease self-management programs. The SPIN-SELF program was designed, with input from focus groups with people with scleroderma and the SPIN Patient Advisory Board, to provide essential knowledge and coping skills to help better manage day-to-day problems in scleroderma. Thanks to the overwhelmingly positive feedback received from SPIN-CHAT participants, SPIN-SELF was reshaped into a videoconference-based group format.

About the SPIN-SELF Program


9 Self-Management Modules 

Each of the 9 modules gives information about a different area and teaches self-management techniques that you can implement at home. Take our short self-management quiz! Based on your answers to the quiz, we will be able to recommend the modules that are most relevant for you. 

Modules


Expert Introduction to Module

SPIN modules generally begin with a video of a health expert who is well-known in the scleroderma community. The health expert welcomes users to the module, gives a brief overview of the topic the module addresses (e.g., symptoms, physiological changes), and describes the module content. A full transcript is available below the video.

Physician Intro


Patient Introduction to Module

Modules also include a patient video introduction. The patient describes their experience with the problem addressed by the module, including topics such as symptoms, impact on their daily life, emotional burden, and their experience using some of the self-management strategies provided in the module. A full transcript is available below the video.

SELF - Patient Intro


Educational Background

This section provides a text overview of the module topic along with diagrams, images, accordion lists, and other visually-appealing elements. Topics covered in this section might include: recognizing warning signs, common symptoms, physical causes, diagnosis, what kind of healthcare providers manage the condition, and common treatments. SPIN modules do not provide medical advice and always emphasize that patients should develop personalized treatment plans with their healthcare provider(s).

SELF - Healthy Eating


General Strategies for Managing the Condition and Symptoms

This section consists of general self-management strategies to help manage a condition or specific problem. These strategies might include recommendations for diet, sleep, activity levels, specific rehabilitation exercises (if applicable), and what users should avoid (e.g., smoking).

SELF - Strategies for managing symptoms


Activities & Interactive Worksheets

Most SPIN modules include one or more activities with text and video instructions and interactive worksheets.

Many activities involve a tracking component in which users are asked to monitor certain variables. This information may be used to assess potential triggers for symptoms (e.g., stress, hours of sleep, smoking), help users manage relevant behaviours and health indicators (e.g., sodium intake, fluid intake, weight), or track key symptoms (e.g., dizzy spells, breathlessness, fatigue) to report to their healthcare provider.

Other activities are designed to help users manage specific symptoms. For example, Activity Pacing is a 3-step method to manage fatigue by developing a personalized activity and rest schedule. Users are given detailed examples and common challenges are addressed (e.g., “I got so involved in the activity that I lost track of time”). Some activities (e.g., relaxation techniques) include video and audio instructions.

Interactive worksheets come in a variety of formats and allow users to fill out worksheets online, save multiple versions of worksheets, and print them out. Users can always access new and saved versions of all worksheets on their My Worksheets page.

SELF Worksheets - Sleep DiaryIn the Sleep Diary activity, users use a worksheet to track sleep quality and habits.

SELF Worksheets - Activity Pacing

In Activity Pacing, users are given detailed instructions to help them establish a baseline level of activity, which is used to develop a personalized activity schedule.

SELF - Relaxation Techniques

SPIN’s Relaxation activity includes audio instructions for 4 different relaxation techniques.


Module Summary

The last section of each module generally contains a bullet-point recap of what users learned in the module. If applicable, users are then prompted to set a goal related to the module content.

SELF Summary - Fatigue

My Goals Feature (Goal Setting & Progress Tracking)

The SPIN Self-Management Program includes a section on learning how to set realistic, measurable goals and to track and achieve them. The My Goals page allows users to (1) create goals relating to their activities, (2) share their goals with family and friends via email to enhance motivation, and (3) input and track their progress online or on a printable worksheet.

SELF - My Goals & Progress

Patient Stories Feature

The SPIN Self-Management Program also includes a section with videos of patients talking about how scleroderma has affected their lives, from diagnosis to present, and what they have done to cope. These patients represent a variety of different backgrounds and experiences with scleroderma.

SELF -  Patient Stories


Program Status

The feasibility trial took place in 2019, and the videoconference-based pilot study will be launched in September 2021. Groups will be meeting 8 times over 12 weeks and will be guided by a facilitator. 

Follow our recruitment ads on social media (Facebook, Twitter) coming soon!

 

Associated Publications

Carrier M, Kwakkenbos L, et al. Protocol for a Randomized Feasibility Trial of the Scleroderma Patient-centered Intervention Network Self-Management (SPIN-SELF) Program. JMIR - Res Protoc. 2020;9(4):e16799. Link

Kwakkenbos L, Cumin J, Carrier M-E, Bartlett SJ, Malcarne VL, Mouthon L, Nielson WR, Rannou R, Welling J, Thombs BD, SPIN Investigators. Factors associated with patient-reported likelihood of using online self-care interventions: a Scleroderma Patient-centered Intervention Network (SPIN) Cohort study. BMJ Open. 2019;9:e029542. Link

Milette K, Thombs BD, Maiorino K, Nielson WR, Körner A, Peláez S. Challenges and strategies for coping with scleroderma: implications for a scleroderma-specific self-management program. Disabil Rehabil. 2019;41(21):2506-2515. Link

Thombs BD, Kwakkenbos L, Riehm KE, Saadat N, Fedoruk C. Comparison of self-efficacy for managing chronic disease between patients with systemic sclerosis and other chronic conditions: systematic review. Rheumatol Int. 2017;37(2):281-292. Link

 

SPIN-SELF Funders

The SPIN-SELF trial has been funded by the Canadian Institutes of Health Research.